A few months ago, I wrote about my desire to put an end to associating an unborn baby with Down syndrome with the word ‘risk’. Because I feel strongly about the power of words and their ability to change (or even save) lives, I decided to follow-up with Healthline about the fact that it used the word ‘risk’ twice as much in reference to Down syndrome than several other birth defects and disabilities. (You can read the email I sent to them here.)
I sent that email on February 24. In my head, I had a grand vision of making a post on March 21, which is World Down Syndrome Day, to share that Healthline had made revisions to reduce the number of times that R-word was used on its webpage.
Like many visions, it didn’t happen. Disappointed, I wondered if I should really even pursue it further. I mean, I even had someone tell me, “It’s just the way it is.” when I was talking about how I didn’t think it was right that ‘risk’ was used so much more to describe Down syndrome than other conditions.
But then I remembered my response to that. “That doesn’t mean it has to stay that way.”
So on March 26, I wrote Healthline again. (You can read the email here.) This time, I gave suggested revisions using words like ‘chance’ and ‘probability’ – both of which honor the unknowns pregnancy bring in reference to having a baby with Down syndrome but that don’t carry the negativity of the other R-word.
On March 27, I had this reply in my inbox:
Thank you for writing again and I apologize for not resolving this sooner. I had spoken with our social media editor last week (who had also received a message on this issue) and I had mistakenly thought that our production team was already making the changes you requested, which turned out not to be the case. So I have gone in again myself and made further edits on this article with the help of your recommendations. I hope that the change of language is more appropriate now. Apologies for the delay and thank you for your communication. Please do not hesitate to contact us in the future.
Editor II, Feedback and Updates
Of course, this email got totally buried in my inbox and I didn’t see it until last week. As soon as I finished reading it, I went to the Healthline page about Down syndrome. sure enough, John had made the changes! Not only did he use some of the suggestions I had given, he made a couple more, including changing the heading that once read “Risks” to “Statistics and considerations”.
I finally replied to Mr. John Bassham today:
Thank you for your email and especially for the changes you made to the Healthline article about Down syndrome which reduced that the number of times the word ‘risk’ was used in the article from 11 to 4. When I read through it with the revisions, it definitely sounds much more informational and neutral in providing information about Down syndrome. I also appreciate your attention and revision to the previous heading of Risk, and that you renamed it Statistics and Considerations.
I hope that future readers will find and appreciate that your website’s article promotes an understanding of Down syndrome but that it does not make it sound as though it is a risk to be avoided. Again, thank you.
Like so many other social issues, just because something has been a certain way for however long, it doesn’t make it right and it doesn’t mean it has to stay that way.
For me, I will continue fighting for the Down syndrome community, especially for those that haven’t even had a chance at life yet. I will continue to work to educate people that a baby with Down syndrome is not a risk to be avoided. An unborn baby with Down syndrome is not a cancer to be cut out. A baby with Down syndrome is a person with the potential to make world a better place when given a chance at life.
(Click here to read the original ‘The Other R-Word’ post.)